This blog is dedicated to discussing the ups and downs of a family with a child who has Mitochondrial Disease. A blog seems to be a good way to share our experiences as a family and to hopefully connect to others with similar experiences.

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Thursday, July 28, 2011

Vacation with Abridged Family

Sometimes when a family member has severe challenges, bringing them everywhere the family goes becomes difficult, stressful, and even unpleasant. But in our case we also feel uneasy about leaving out our daughter, Roxie, too regularly. Not taking her to the roller rink or to the farmers market isn't really a big deal as I don't hesitate to leave Roxie with her CAP worker for a few hours at a time. But when we discussed going to Baldhead Island over the summer with a group of friends, the subject of how to make such a trip with Roxie along quickly came up. We weren't able to have a CAP worker come with us on this trip, which would have solved some of the issues related to the necessary constant supervision that Roxie requires. But also because of the nature of the trip, we knew Roxie would have trouble. The island is only accessible by boat, and Roxie really, really hates riding on boats because of the motor's sound. So the trip would begin with 45 minutes of screaming, crying, thrashing, and stress. Then there was the issue that golf carts are used to get around and that Roxie wouldn't understand how to stay safe so we'd have to try to hold her down on the ride and hope she didn't slip out of our hands. Also, as most beach houses, the living area is on the second floor, so we would need to watch Roxie carefully to be sure she didn't fall down the stairs. For optimal sleeping conditions, Roxie requires her own quiet room, but she probably would have had to sleep on the floor next to our bed and we would have prayed that she would sleep through the night with us in the room with her because dealing with her challenges with sleep deprivation is not fun. And the challenge of brining all of her supplies on a boat was something I hadn't even thought of until I was packing up for the trip, but would have been challenging and cumbersome. She has many necessary items on a daily basis that are readily available and would have to be brought along. But luckily we had decided the month before the trip to leave Roxie behind in Charlotte with my Mom and Dad for the week long vacation to Baldhead Island.

I feel like I am making excuses and still feel some guilt that we didn't bring Roxie along last week, but it did make the trip more relaxing for sure. And yes, we did have a blast. In addition to the reasons previously mentioned, part of the motivation to leave Roxie at home was likely that daily living with her is tiring and having her away from home and at the beach in particular is even more tiring. As a friend puts it, "A beach trip with kids isn't a vacation, it is a relocation." This is particularly true with Roxie and likely always will be true. As our other kids grow the have obtained some abilities to do some things for themselves and we can only hope this independence will continue to blossom. But with Roxie on vacation, it is like having a giant one or two year old who requires total care.

We missed her very much, but were able to enjoy some time as parents without the additional stress created by Roxie's disease. The trip also made me realize how lucky we are to have a set of grandparents with a beach house, where we typically go to the beach during the summer. Not because of all the money that saves us (although that is nice), but because the house is stocked with many of the special items Roxie requires (including an elevator) and because we have extra hands from grandparents.

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Meet Roxie

Roxie turns 9 in November of 2011. Although she has had to work hard her entire life to learn basic skills like sitting up or using her hands, she is a happy little girl. Roxie has Mitochondrial Disease which has resulted in profound hypotonia, epilepsy, sensory integration disorder, cortical vision impairment, and fragile health. She loves music, her family, and interacting with other children.